Abstract
Objective: In hereditary and familial cancer, counselees are requested to inform their at-risk relatives. We developed an intervention to support counselees in this task. Methods: A randomized controlled trial was conducted aimed at improving cancer genetic counselees’ i) knowledge, ii) motivation to disclose information, and ii) self-efficacy in this regard. Eligible participants were randomized to telephonic counseling (n = 148), or standard care (n = 157) and assessed at baseline, 1 week post-intervention, and 4 months after study enrolment. Results: No between-group differences were found in participants’ knowledge, motivation, and self-efficacy. Knowledge concerning which second-degree relatives to inform was lower compared to first-degree relatives. About 60% of the participants was of the opinion that they needed to inform more relatives than stated in their summary letter and only about 50% were correctly aware of which information to disclose. Of note, at baseline, almost 80% of the participants had already correctly informed their at-risk relatives. Conclusions: Since, unexpectedly, counselees already informed most of their relatives before the intervention was offered, efficacy of the intervention could not convincingly be determined. Counselees’ knowledge about whom to inform about what is suboptimal. Practice Implications: Future interventions should target a more hom*ogeneous sample and address counselees’ understanding and recall.
| Original language | English |
|---|---|
| Pages (from-to) | 1611-1619 |
| Journal | Patient Education and Counseling |
| Volume | 101 |
| Issue number | 9 |
| DOIs | |
| Publication status | Published - 2018 |
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Eijzenga, W., de Geus, E., Aalfs, C. M., Menko, F. H., Sijmons, R. H., de Haes, H. C. J. M. (2018). How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial. Patient Education and Counseling, 101(9), 1611-1619. https://doi.org/10.1016/j.pec.2018.05.009
Eijzenga, Willem ; de Geus, Eveline ; Aalfs, Cora M. et al. / How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial. In: Patient Education and Counseling. 2018 ; Vol. 101, No. 9. pp. 1611-1619.
@article{a187ecebb9644f64a14b707f480393e0,
title = "How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial",
abstract = "Objective: In hereditary and familial cancer, counselees are requested to inform their at-risk relatives. We developed an intervention to support counselees in this task. Methods: A randomized controlled trial was conducted aimed at improving cancer genetic counselees{\textquoteright} i) knowledge, ii) motivation to disclose information, and ii) self-efficacy in this regard. Eligible participants were randomized to telephonic counseling (n = 148), or standard care (n = 157) and assessed at baseline, 1 week post-intervention, and 4 months after study enrolment. Results: No between-group differences were found in participants{\textquoteright} knowledge, motivation, and self-efficacy. Knowledge concerning which second-degree relatives to inform was lower compared to first-degree relatives. About 60% of the participants was of the opinion that they needed to inform more relatives than stated in their summary letter and only about 50% were correctly aware of which information to disclose. Of note, at baseline, almost 80% of the participants had already correctly informed their at-risk relatives. Conclusions: Since, unexpectedly, counselees already informed most of their relatives before the intervention was offered, efficacy of the intervention could not convincingly be determined. Counselees{\textquoteright} knowledge about whom to inform about what is suboptimal. Practice Implications: Future interventions should target a more hom*ogeneous sample and address counselees{\textquoteright} understanding and recall.",
author = "Willem Eijzenga and {de Geus}, Eveline and Aalfs, {Cora M.} and Menko, {Fred H.} and Sijmons, {Rolf H.} and {de Haes}, {Hanneke C. J. M.} and Smets, {Ellen M. A.}",
year = "2018",
doi = "https://doi.org/10.1016/j.pec.2018.05.009",
language = "English",
volume = "101",
pages = "1611--1619",
journal = "Patient Education and Counseling",
issn = "0738-3991",
publisher = "Elsevier Ireland Ltd",
number = "9",
}
Eijzenga, W, de Geus, E, Aalfs, CM, Menko, FH, Sijmons, RH, de Haes, HCJM 2018, 'How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial', Patient Education and Counseling, vol. 101, no. 9, pp. 1611-1619. https://doi.org/10.1016/j.pec.2018.05.009
How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial. / Eijzenga, Willem; de Geus, Eveline; Aalfs, Cora M. et al.
In: Patient Education and Counseling, Vol. 101, No. 9, 2018, p. 1611-1619.
Research output: Contribution to journal › Article › Academic › peer-review
TY - JOUR
T1 - How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial
AU - Eijzenga, Willem
AU - de Geus, Eveline
AU - Aalfs, Cora M.
AU - Menko, Fred H.
AU - Sijmons, Rolf H.
AU - de Haes, Hanneke C. J. M.
AU - Smets, Ellen M. A.
PY - 2018
Y1 - 2018
N2 - Objective: In hereditary and familial cancer, counselees are requested to inform their at-risk relatives. We developed an intervention to support counselees in this task. Methods: A randomized controlled trial was conducted aimed at improving cancer genetic counselees’ i) knowledge, ii) motivation to disclose information, and ii) self-efficacy in this regard. Eligible participants were randomized to telephonic counseling (n = 148), or standard care (n = 157) and assessed at baseline, 1 week post-intervention, and 4 months after study enrolment. Results: No between-group differences were found in participants’ knowledge, motivation, and self-efficacy. Knowledge concerning which second-degree relatives to inform was lower compared to first-degree relatives. About 60% of the participants was of the opinion that they needed to inform more relatives than stated in their summary letter and only about 50% were correctly aware of which information to disclose. Of note, at baseline, almost 80% of the participants had already correctly informed their at-risk relatives. Conclusions: Since, unexpectedly, counselees already informed most of their relatives before the intervention was offered, efficacy of the intervention could not convincingly be determined. Counselees’ knowledge about whom to inform about what is suboptimal. Practice Implications: Future interventions should target a more hom*ogeneous sample and address counselees’ understanding and recall.
AB - Objective: In hereditary and familial cancer, counselees are requested to inform their at-risk relatives. We developed an intervention to support counselees in this task. Methods: A randomized controlled trial was conducted aimed at improving cancer genetic counselees’ i) knowledge, ii) motivation to disclose information, and ii) self-efficacy in this regard. Eligible participants were randomized to telephonic counseling (n = 148), or standard care (n = 157) and assessed at baseline, 1 week post-intervention, and 4 months after study enrolment. Results: No between-group differences were found in participants’ knowledge, motivation, and self-efficacy. Knowledge concerning which second-degree relatives to inform was lower compared to first-degree relatives. About 60% of the participants was of the opinion that they needed to inform more relatives than stated in their summary letter and only about 50% were correctly aware of which information to disclose. Of note, at baseline, almost 80% of the participants had already correctly informed their at-risk relatives. Conclusions: Since, unexpectedly, counselees already informed most of their relatives before the intervention was offered, efficacy of the intervention could not convincingly be determined. Counselees’ knowledge about whom to inform about what is suboptimal. Practice Implications: Future interventions should target a more hom*ogeneous sample and address counselees’ understanding and recall.
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UR - https://www.ncbi.nlm.nih.gov/pubmed/29789176
U2 - https://doi.org/10.1016/j.pec.2018.05.009
DO - https://doi.org/10.1016/j.pec.2018.05.009
M3 - Article
C2 - 29789176
SN - 0738-3991
VL - 101
SP - 1611
EP - 1619
JO - Patient Education and Counseling
JF - Patient Education and Counseling
IS - 9
ER -
Eijzenga W, de Geus E, Aalfs CM, Menko FH, Sijmons RH, de Haes HCJM et al. How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial. Patient Education and Counseling. 2018;101(9):1611-1619. doi: https://doi.org/10.1016/j.pec.2018.05.009
